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Hii, I know I'm Not really active on here but I read everything!! I have a question... I'm Really struggling With horrible Yaw pains lately... has anyone Tips or tricks To make the pain less Or soft food tips that keep you full?

Hi 💜 I'm not super active here but I'm just so low today and I wasn't sure who would understand. I cried for hours yesterday, I'm just so fed up of being sick and in pain all the time. I feel like all I do is make things hard for people

Hi guys I've been asked to write another blog for the paper so I'm doing a bit of research for about how corona has effected the chronically ill & disabled ... things like not being able to access treatments & how the government seems to have forgotten about those on the vunrable list can you please comment your experiences thank you ❤

Alison Moore
I wasn't able to get physical therapy for a month. At first it didn't seem like a big deal but as a result I backslid a lot. I was having a terrible pain. A lot of the hard work I had done to get myself where I was ended up ruined. Physical therapy has been big for my pain management and I couldn't access it.

Early on, when certain grocery items were being restricted to one or two at a time (in Australia), I felt stressed that I wouldn't get what I needed. I was stressed not only about having toilet paper, but having *unscented* toilet paper because my sensitivities are so severe. Similarly, I was concerned about having access to the limited number of foods I can eat. I can't just make substitutions for other similar foods or even different brands, b... moreFabulous. Will you show us when it's published? 😊

Early on, when certain grocery items were being restricted to one or two at a time (in Australia), I felt stressed that I wouldn't get what I needed. I was stressed not only about having toilet paper, but having *unscented* toilet paper because my sensitivities are so severe. Similarly, I was concerned about having access to the limited number of foods I can eat. I can't just make substitutions for other similar foods or even different brands, because they would make me unwell. Fortunately it all turned out okay, but it wasn't fun while it lasted.

Janelle WenzlI've had to push back all of my specialists' appts and I had a G.I. procedure get rescheduled. In the beginning, I struggled a lot with anxiety and depression, but it has gotten better. I am a stepmother and we didn't get our kids for a month because they had to be quarantined for potential exposure and when they did come (early on) I had to make them stay away from me and made sure to have them use all separate serving utensils at dinner time. My stepdaughter and I are really tight and it was v... moreI've had to push back all of my specialists' appts and I had a G.I. procedure get rescheduled. In the beginning, I struggled a lot with anxiety and depression, but it has gotten better. I am a stepmother and we didn't get our kids for a month because they had to be quarantined for potential exposure and when they did come (early on) I had to make them stay away from me and made sure to have them use all separate serving utensils at dinner time. My stepdaughter and I are really tight and it was very difficult to not only be away from them but also to not be able to give hugs and stuff.

The main ways it's affected me are in terms of medical testing. I was getting ready to have my next round of imaging and endocrinology done for my pituitary tumor, to ensure it hasn't grown and isn't messing with my hormones, and all of that was immediately cancelled. It still hasn't been done, but my endocrinologist is beginning to book appointments again for mid-June. Obviously it's important to have things looked at regularly, but hopefully no... moreI hope you get a lot of great responses, Molly!

The main ways it's affected me are in terms of medical testing. I was getting ready to have my next round of imaging and endocrinology done for my pituitary tumor, to ensure it hasn't grown and isn't messing with my hormones, and all of that was immediately cancelled. It still hasn't been done, but my endocrinologist is beginning to book appointments again for mid-June. Obviously it's important to have things looked at regularly, but hopefully nothing has changed since my last round of testing.

It also took more than a month to fill my inhaler prescription because there was a shortage with Covid-19. Thankfully I already had one that was still mostly good while I waited.

hi friends! I've been meaning to write out a post but have been too tired by the time I get home from work. I haven't been on here since November, so I thought I'd reintroduce myself.
I'm Alexis and I'm 26 years old. I live in Arizona with my fiance, dog, cat & hedgehog. we're going to be taking over my childhood home when my parents retire in August and there's SO much to do to it. I'm bisexual and believe in the paranormal, law of attraction and am very spiritual.
I have been diagnosed with Po... morehi friends! I've been meaning to write out a post but have been too tired by the time I get home from work. I haven't been on here since November, so I thought I'd reintroduce myself.
I'm Alexis and I'm 26 years old. I live in Arizona with my fiance, dog, cat & hedgehog. we're going to be taking over my childhood home when my parents retire in August and there's SO much to do to it. I'm bisexual and believe in the paranormal, law of attraction and am very spiritual.
I have been diagnosed with PoTS, MCAS, PCOS, chronic migraines, chronic fatigue, and some type of synecope (fainting). I'm waiting to see a GI for my stomach issues which are getting a bit more severe.
I work full time at a psychology office and draw when I can find the energy to do so (insta: paperrosies.studio). I used to do photography and write; maybe that'll come back after I find the write treatment process.
I hope we can connect and build relationships because I'm really missing out on having friends. I don't mean to be a flaky person, just sometimes I really can't do things & it'd be nice to have someone that understands.
You can add me on anything & everything if you'd like!
snapchat & insta: xoalexispaige
twitter: alexispaige_jpg#introduction

I've recently been diagnosed with Fibro and prescribed Cymbalta but I'm reading some things that make me hesitant to start it. Does anyone have experience with Cymbalta or possibly alternative treatments // tricks for decreasing your number of crippling flare ups? 🖤

Alison Moore
I took one pill of cymbalta and refused to take another. I was sick for days after just one pill. Some people swear by it but I couldn't take it. I think you have to listen to what your body tells you. You're body will let you know if it's for you or not.

dmkI tried it based on recommendations after i was at mayo clinic and in 2weeks i stopped it. It made my legs swell and my pain was then increased with joint pain and overall i felt more off balance. This was after i weaned off of zoloft and learned it had been masking my muscle weakness (dropping things, hands) but i had severe withdrawl as i weaned off so was switched 2low dose prozac (which im not sure does much of anything but higher dose makes me more tired). I wish i had stayed on zoloft but ... moreI tried it based on recommendations after i was at mayo clinic and in 2weeks i stopped it. It made my legs swell and my pain was then increased with joint pain and overall i felt more off balance. This was after i weaned off of zoloft and learned it had been masking my muscle weakness (dropping things, hands) but i had severe withdrawl as i weaned off so was switched 2low dose prozac (which im not sure does much of anything but higher dose makes me more tired). I wish i had stayed on zoloft but now i just deal with hand weakness bc i have developed essential tremor and dont want 2b on anti seizure drugs. If u try anything and it doesnt work, just be sure drs switch u 2 a different class of drugs (why i didnt try lyrica as would likey have same result as those in that class that made me worse). A good dr wont prescribe that way but a lot would just 2push a certain drug.

Ashley Becker
I was NOT a fan of cymbalta but I took it for depression (incorrectly diagnosed, I am actually bipolar type 2) and was diagnosed with fibro last year but I wouldn't try it. However, like Gina said, medication differs from person to person and I know a few people that benefit from it.

When you set your expectations low (much lower than you think you need to) but you're still unable to reach them. Over the years as I've gotten sicker I've gotten better at re-evaluating my threshold of activity (or so I thought). I only make the loosest of goals for the bare minimum of things in an attempt to avoid constant disappointment & crippling failure. When I reach them, it works well; I swallow a bit of disappointment while I accept the situation but at least I feel relieved or like I'v... moreWhen you set your expectations low (much lower than you think you need to) but you're still unable to reach them. Over the years as I've gotten sicker I've gotten better at re-evaluating my threshold of activity (or so I thought). I only make the loosest of goals for the bare minimum of things in an attempt to avoid constant disappointment & crippling failure. When I reach them, it works well; I swallow a bit of disappointment while I accept the situation but at least I feel relieved or like I've accomplished something if it pays off. But when I fail to even reach the smallest of goals it sends me into a spiral and it's been happening a lot lately. This chronic illness stuff is hard and unrelenting. I thought I'd be better at navigating it after so many years. I'm sure many of you guys can relate.

Sarah Sierra
I can relate so hard. It can feel like an endless spiral of accepting less and less. It just feels like grief. I hope things start to spiral upwards sometimes for you 💙 we are all here to listen when it gets too much to manage by yourself x

Hello, friends, long time no see! Remember a while back when I asked about your experiences with Amitriptyline because I was about to start it, and then shortly after I went MIA here? Yeah, starting it is pretty much the reason I've not been on much.

I'm a few months in now, and feeling better. I've written a post of my experiences going on it for migraines, insomnia, and digestive issues, along with a list of things I would have told my past self before starting it. Hopefully it will be helpf... moreHello, friends, long time no see! Remember a while back when I asked about your experiences with Amitriptyline because I was about to start it, and then shortly after I went MIA here? Yeah, starting it is pretty much the reason I've not been on much.

I'm a few months in now, and feeling better. I've written a post of my experiences going on it for migraines, insomnia, and digestive issues, along with a list of things I would have told my past self before starting it. Hopefully it will be helpful for anyone else newly on it, or about to go on it.

Strap yourselves ladies, this is a long read but I appreciate any help 💛

I have Severe Endometriosis and IC and I also suffer from nerve pain. This past year I have been having some new widespread pains (along with my endo and nerve pains and symptoms) that I assume is related to Fibromyalgia but I can't be sure.

I can't exactly bring this theory up with a doctor because any doctor and/or speclialist I have seen so far is more focused on my Endo and blame everything on that, despite me descri... moreStrap yourselves ladies, this is a long read but I appreciate any help 💛

I have Severe Endometriosis and IC and I also suffer from nerve pain. This past year I have been having some new widespread pains (along with my endo and nerve pains and symptoms) that I assume is related to Fibromyalgia but I can't be sure.

I can't exactly bring this theory up with a doctor because any doctor and/or speclialist I have seen so far is more focused on my Endo and blame everything on that, despite me describing pains that I never experienced before my first lap surgery last year when I was diagnosed with Endo.

There is this constant feeling of heaviness in my shoulders and down my arms to my wrists and legs down to my ankles that either occur all together with an Endo flare or separately. There is a deep achy pain in these limbs and it can spread through my torso too. When the pain reaches my wrists and/or ankles it feels like they are being squeezed and it can get so painful that all I can do is sit there limply unable to move and just cry.

These are new pains/sensations for me, and together with my Endo pain and symptoms and the occasional shooting nerve pain, I'm really struggling with it as well as chronic fatigue. I've just been told to take panadeine or tramadol (the only 2 meds that relieve my pain a bit) and anti-inflammatories every day (which I hate doing) until my next endo specialist appointment.

Could this be Fibromyalgia or something else? Related to Endo maybe? My GP couldn't help me find an answer.

Sara Remy
Oh I am so sorry you're experiencing this. It sounds just awful. I'm not sure if this is helpful, except for ruling things out, but I have severe endo as well, and I've never experienced those symptoms. That being said, a specialist might know whether or not it could be endo related. Or maybe it is fibro like you suspect? I hope whatever is happening that it eases and you're able to find answers and treatment soon!

Helen
I can't help I’m sorry, only offer that heaviness and squeezing sensations are something I get. Heat helps a bit - warm, lightweight blankets - and I take naproxen. I'm guessing though that you've already tried that?
I really hope someone here or your specialist has some answers x

Lately the nerve pain in my feet (mainly my heels) has been getting worse. Doctors are thinking it's idiopathic neuropathy. I have Fibro too. How do you all deal with nerve pain? Find anything that works? I'm on lyrica but the help I get from it is limited. I can't stand for more than 3 minutes without pain. It's just driving me to the end of my sanity. 😢

Ariana
Hi! Im not sure if I could be helpful but, I was bed bound for about three months, in a wheel chair for three months after that and, housebound for almost a year. Im not fully functioning but I am able to work on my art and help around the house some. Feel free to message or find me on instagram _arianagrace__
I'll share this with a few tired girls I know who may could send some encouragement too<3

E AHi, Sophie. I’m really glad that you’re here!
Unfortunately, different chronic illnesses have different challenges, so what's helpful for someone bedbound by a certain illness may be harmful to someone bedbound by another, so it's difficult to give generic advice. I’m restricted by my ME/CFS (not bed bound, but I have to be reclined the majority of the day) and what might help someone who is bedbound because of POTS improve, for example, would be harmful for me.
Again, glad you're here and h... moreHi, Sophie. I’m really glad that you’re here!
Unfortunately, different chronic illnesses have different challenges, so what's helpful for someone bedbound by a certain illness may be harmful to someone bedbound by another, so it's difficult to give generic advice. I’m restricted by my ME/CFS (not bed bound, but I have to be reclined the majority of the day) and what might help someone who is bedbound because of POTS improve, for example, would be harmful for me.
Again, glad you're here and hope you can find some answers 💕

Jasmine Rooney
I just have to take a vitamin D 1000IU tablet daily, apparently it helps with my blood counts each time. Cause im photosensitive due to my medications I have to avoid the sun so its necessary

E A
I’ve tried oral B12 supplements,B12 injections, and and currently trying a B12 topical oil from an Australian scientist, in addition to taking methyfolate and other vitamins to theoretically help it get absorbed better into my body. So far, no luck, but I have heard of quite a few people who see significant improvements, especially from the injections.

Michelle Catley
Yes, I take a daily supplement, and have been for a while(I was already vegetarian for 2 years before RA), so I can definitely tell if I don't take it now. I feel more tired and weak if I miss a few days.